Family Stories - Children 0-3
A southern law firm, advertising their services on television, uses the slogan "One call does it all." Mike and Shannon Stermel received one call on August 4, 2006, with news that all the law firms in the world working together couldn't fix.
"We received that devastating phone call and the question as to what was wrong with our precious son was answered," said Mike Stermel. "He had Prader-Willi syndrome."
Hearing those words literally knocks the wind out of most of us, but the Stermels set their sails quickly and were on the phone with Kathryn McGhee of FPWR on the first night of the diagnosis.
"I felt that I had to dive right in with FPWR," said Mike, "and I am so glad that I did."
A few months after receiving the diagnosis, the Stermels were fundraising right and left. They activated their incredible network of friends in Philadelphia and since then have held two annual "beef 'N beer" nights featuring many great prizes as well as several local comedians. They also held a tailgate party after a Phillies game, and a golf outing. The group has already raised $25,000 to support PWS research through FPWR and says that this is just the beginning.
"We're planning another golf outing, some more tailgate parties, possibly a
benefit rock concert, and what is becoming our signature event, an Annual "beef 'N beer" in November," reported Mike. "We plan to have our best prize list to date and we also intend to double our donation to FPWR in 2009!"
The Stermels both count their blessings every day and are so thankful for their dear baby Michael, now almost 3 years old. Mike reflected that they have learned more about feeding tubes, growth hormone shots, and hyperphagia than they ever dreamed; all part of parenting in the world of PWS.
"Michael is a wonderful, beautiful, happy child," said Shannon, "and with the help of our family, friends and the FPWR family, I believe he can achieve anything!"
The Stermels, along with their trusty crew of friends and family, are helping to turn the world of PWS upside down. Their enthusiasm, optimism, and determination will move FPWR closer to its goal of eliminating the challenges of Prader-Willi syndrome through the advancement of research.